WHAT A PAST FEW MONTHS Part 2 – I HAVE CANCER
The following story is part two about my health. Part two deals with sleep apnea, kidneys, periodontal disease, prostate cancer and cancer in the lymph nodes. The past few months have included life-challenging events.
When you finally find a reason that makes you want to live,
When you finally find a reason that makes you want to give
Hold on….
Whatever you may face, I hope you believe in God, hope you stay positive and hope you still laugh.
It’s the 4th of February. I got to Dr Ben’s office early. That usually does not happen. The appointment goes well and Dr. Ben sets up a request for a sleep apnea test. Near the end of this meeting Doctor Ben says, “You have a blood score of 9.” The last time I heard a score for my blood was 12 years ago related to my prostate. At that time there was a concern about cancer when it was a score of 2.6.
12 years ago, tests showed I had prostate cancer. I had 5 weeks of radiation therapy; radioactive seeds were placed in my prostate and I ended up needing to urinate every 45 to 60 minutes for one year. That was from a 2.6 reading.
What seemed strange to me was I had lost 95 lbs. over the past year. I did this by adjusting my diet. I felt like and I thought I was in great shape, however, there seems to be a problem. I thought “What does a “9” mean?” Am I worried? No! Am I concerned? Yes.
Doc said he will set up a meeting for me with a cancer specialist. I did this before and felt like I know what is coming. One week went by with no call. I called the Dr recommended by Dr. Ben. I was told they would get back to me as they did not have all the information yet. Four more days went by and I called again. I was told by the secretary, “We cannot help you.” It was the middle of February. What was meant by, “We cannot help you.” Am I worried? No! Am I concerned? Yes.
Today, I called Dr. Ben. He says they will find someone else and I can also call. I look up a Dr. given to me by Dr. Ben. Online it reads negatively. It reads, “No response when called. Did not communicate with me.” This Dr. seems to have problems. I stop checking on this Dr. My insurance gives me a few names. I call a cancer doctor whose office is close to my heart Dr. No negatives are found online. I set up an appointment.
My sleep apnea testing packet arrives in the mail. I complete the test on February 10th. I wore a small ring on my finger. It took two nights for the test. I sent it in
A week later I get a call from Dr. Bu. (my heart doctor). I am told I do not need to keep taking the small aspirin I have been taking for over 5 years. Another pill I am taking is enough to help stop blood clots. I believe the blood clots were caused, many years ago, by the shot I took for covid. That shot was offered as one shot stop for covid instead of two shots. They took the one shot, blue covid medicine, off the market. It was causing blood clots.
February 20th, I picked up my sleep apnea machine. I am told I quit breathing an average of 33 times an hour during my sleep. I am told this is very high. I now use the sleep apnea machine every day. A smiley face shows up on my breathing machine if I score 75 points or higher during the night. I must use the machine for 6 hours for a smiley face. I also purchase a special “Derila” pillow to help the angle of my neck when I sleep. Both the air machine and the pillow are to help open my airway when I sleep. They seem to help.
On February 30th, I have another appointment with Dr. Ben. This is to discuss my use of the sleep apnea machine and talk about the blood reading I received. When I arrive, we talk briefly about the sleep apnea machine. Doc needs to review more information to determine if the pressure for the air has to be raised. This means an appointment on March 30th. I also tell Dr. Ben I have contacted a different cancer Dr.
March was great. I substitute teach on many days and I help 12 days with the county fair. My time is filled every day from 6:00 am until 11:30 pm. The kids in school are great and the fair has thousands of people daily. Every day goes by quickly in March.
It’s March 30th I meet with Dr. Ben again. This is 40 days after starting the use of the sleep apnea machine. Even though I hoped to increase the settings on my sleep apnea machine, today, Doc wants to review the information more. We reschedule are discussion with a meeting in June. My settings remain the same. My Derila pillow is helping. I am thinking about how to test the sleep apnea machine with and without the pillow. I also want to test my sleep apnea with just the pillow and no machine. This seems to be the most challenging to test.
Today, on April 1st, I am meeting with Dr Bold about the blood reading. It has been almost 2 months to get this appointment. Dr. Bold is very friendly and knowledgeable. She has read my blood test and asks for another blood test. It seems I misunderstood my reading, stated by Dr. Ben, 2 months ago. I had a reading of 11.9 instead of 9. Dr Bold asks me to set up another blood test and get a pet scan. I got the blood test at the Drs. office this afternoon. Adrian, my wife, found out that I may have cancer, today, for the first time. I have not previously talked about cancer with her.
I get a call on my blood test on April 3rd. My score is now 15. The score had risen 3 points in 2 months.
On April 6th I have a pet scan. The machine is run by a former military man. He is positive and the pet scan only takes ½ hour. Dr. Bold calls me on April 9th to confirm I have cancer. They call it prostate cancer in the lymph nodes. I do not know how that can happen when I have been told that there is no cancer in my prostate, showing in the pet scan test.
On Tuesday, April 14th Dr. Bold has an approval in place for a shot of Lupron. This shot will be good for 3 months. I am told they cannot get rid of the cancer; however, they can hopefully keep it under control. I ask, “can I live 10 years?” The answer was, “we have some people live that long”. I am hoping, with AI, they may be able to find some possible cures in 10 years.
Dr. Bold’s nurse gives me a shot with a 2-foot syringe and a 1 foot needle. I am just checking to see if you are paying attention. In reality it is just a normal 6 inch syringe and a short needle…There is no pain and I do not feel the shot.
From April 15th until April 27th I dod not have a Drs appointment. On April 28th I visit Dr. A, my kidney Dr. Dr. A is married to Dr. Ben, my regular Dr. School lets me out 10 minutes early and I make it to her office in 30 minutes. Dr. A says, “this is your best appointment in 3 years.” My kidneys have been at stage 3 for all three years.
My kidneys have maintained their health even with other medical problems. I have worked on my diet and avoided most sweets. I also tend to avoid dark sodas. Though I lowered my weight to 213 lbs. at Christmas, I am starting to gain weight and weigh 225lbs. I have heard about people losing weight while they have cancer and have decided to loosen up my diet. Could cancer reduce my weight? My goal is to maintain or raise my weight.
During the past 6 weeks I have substitute taught every available day. It is an enjoyable time working with students and with teachers. I also study my science lesson book daily. I want to take the science test for teaching science again this summer. Today is Memorial Day. We have two ½ days of school on Tuesday and Wednesday. Then school is out until next fall.
School was out yesterday, on May 27th.. I am meeting with Dr. G, today, on May 28th. Dr. G is the specialist Dr. Bold met on the first day of my first appointment with Dr. Bold. I had set this apt., with Dr. G, on Apr 14th. I am concerned about cancer, however, after waiting two months for my apt. with Dr. Bold, and having received my first shot, I feel I can wait.
Also, Dr. G can’t set appointments after 3 pm. I have decided to work as many days as possible as my payments have gone from $40 each, last year, to $60 each, this year, when talking to specialists. Also, I just took the Lupron shot, which is good for 3 months.
Dr. G and her assistant are very knowledgeable and patient. Again, I was referred to Dr. G by Dr. Bold. Now I have two Drs to help with the cancer. Dr. G listens to me discuss what I have for symptoms and concerns. Dr G suggests using pills instead of the shots. She suggests 2 spills that seemed to be having success with my type of cancer.
The pills are Orgovyx and Nubeqa. Instead of one shot every 3 months, Orgovyx will be taken once per day. The Nubeqa will be 4 pills daily. This all seems ok in the meeting. In this plan, there are no shots. I left the meeting feeling that I can get some pills and that will control the cancer; possibly better than the shot.
It seems like they want me to start on the pills right away. I do not feel good about that until I know more about the pills. They ask me to take another blood test to see how the Lupron was working. It is nearly 5 pm, however, their office completes the blood test this afternoon.
Adrian and I stop at the HobNob drive in restaurant on the way home. It has been closed, due to covid, for the past few years. After 67 years in business, it closed. After the Dr’s meeting it is a great place to stop. We split a hot dog, french fries and a malt. Then we drive home to discuss what we learned today.
I talk with Adrian in the car, “What do you think these pills cost?” I ask. We have no idea, so she starts looking online. We get home and I call Blue Cross. Eventually we find that the Nubeqa was around $14,000 a month and the Orgovyx is approximately $2,800 per month. This is what the insurance company told us they agreed to pay. Could this be possible? Almost $17,000 per month? I felt sicker, from the price, than I had at any time in my life. “Even with my insurance, how can I afford to pay for this?”, I asked myself.
I know companies have to pay for the development of pills and I know that these pills are supposed to be helpful. It just bothers me that it may cost over $200,000, in one year, to fight this cancer. This could easily be in the millions if just 5 more people are using these meds.
Over the next few weeks, I want to search for a lower priced way to address the cancer. I find out that people are paying these high prices and more for other treatments. I can’t find a price for Lupron, though one person has said they think it is more than the two pills.
It is 8:30 am, on June 9th. I see special nurse “A”, Dr G’s assistant. Their office has moved about 1 mile to a new building and their office is now next to one of the hospitals in town. It is also next to the building with Dr. Bold. She was a special nurse. She was very knowledgeable and seemed like talking to a Dr. We discuss the pills and the prices of the pills. We also discuss the shot, I was given, of Lupron. She said my score had lowered from 15 to 2.6. This 2.6 score played a big part in our discussion.
We discussed staying with the Lupron shot. She asked about side effects, and I realize I have been having hot flashes. This is due to the reduction of testosterone. This is what the Lupron is supposed to do. The cancer is feeding on the testosterone and less testosterone means less cancer.
When doing our research, we find that the Lupron shot did not seem to be mentioned on my insurance company records. I needed this information. We left nurse “A” with the goal for us to come up with which office would give me the shots and how would the other office help with the plan. I also needed the price of the Lupron.
This afternoon, on June 9th at 3:00 pm, I see Dr. Ben. We discuss cancer and discuss sleep apnea. He tells me that before I had the 11.9 reading, I had a score as low as .80. I did not even remember hearing a low reading like that. He says that whatever is decided by the heart Drs. and the cancer Drs. will be ok. That is why I am seeing those specialists. We then discuss the sleep apnea.
He says he has records about my stopping breathing. Stopping breathing dropped from 33 times per hour to 4 times per hour. I am amazed. I give him some “dates” to check related to using my special pillow. He said he would review those dates to check how the pillow helped.
It’s June 10th and my challenges change from cancer and sleep apnea to caring for my gums. At 8 am I visit the periodontist, Dr S. She checks my gums. Her aids are great and so is she. She identifies 2 quarters of my mouth that she believes need special attention for the gums. I enjoy being at this appointment.
When we finish, I look forward to coming back. The dentist left the room and 10 minutes later her aide came in with a projected bill. It will be over $3,000 to have my gums worked on. I wish I paid more attention to my insurance.
Though I have Medicare and insurance, it seems I have choices on coverage for my insurance. I chose the coverage that does not help me with my gums. At this point it seems I will go with nothing done with my gums accept a deep clean when I go back to having the college help me. I have been having deep cleans at the dental college. The deep cleaning helps, however, doesn’t do what the dentist believes needs done.
Dr. S suggests that I also use a water flosser. It turns out I have a Waterpik flosser at home. Adrian bought it for me 4 years ago and it is the one the dentist recommends. We have had it for 4 years. I just did not use a very high setting so I seldom tried it. We have had it for 4 years and I did not use it. Perhaps if I used it, I would not have the problems I have. I am using it daily at this time. Maybe this information will help you.
It’s 3:30 on June 16th. I get to visit “K”, Dr Bu’s assistant. I ask “K” to check out the suggested meds and how they interacted with my heart. He says, “Yes, we should check them out.” “K” agrees that they all list some possible heart problems and wanted to check my heart with a stress test. If the stress test is ok, he feels we can go with another shot. The stress test is set for July 13th at 3:30.
It’s 8:30 am. on June 17th. I see Dr Bold for the third time. I discuss all I have learned. I share the information about our last two meetings with Dr G and her associate. I explained the prices of the medications and the fact that she was not listed as requesting Lupron from my insurance company. I also shared the success we were having with the Lupron shot (2.6).
We discuss our meeting with “K” and the future testing. We discussed wanting to have the Lupron shots, if the price was reasonable and the heart testing was ok. We were at Dr. Bold’s office for 90 minutes waiting for information on the shot. An aide came in with a price of $1600 every 3 months. She said we could go home. She then went back to get more information. That was great
We leave Dr. Bold’s office around 10:00 am. Adrian and I decide to stop early for the Bone Density test instead of coming back in 3 hours . The Bone Density office was 4 blocks from Dr Bold’s office. We are fortunate and they allow us in for the test at 11:00 am. The person giving the test studied at Sun Coast where I taught for 25 years.
We have a great discussion about how he went into working with an ambulance service and then received more training and now does bone density testing and x-rays. We were done by 11:30.
It’s 2 pmand we get a call from Dr. Bold’s office. The person was someone that was in charge of the department that worked on getting prices for the medications. She said the price was $3300 for 3 months of Lupron instead of the $1600. This disappointed me, however, she explained that many other drugs were more expensive. I realized that $1100 per month was much less than $17,000 per month. I am grateful for the lower price. She also explained that my copay would be $60. I questioned this; however, she again explained that the copay was $60 for getting the shot. The $3300 was covered. I was amazed and happy.
I decided, after a talk with Adrian, that I have another blood test on July 10th. That will tell if my score had improved or if the Lupron kept the score low. One shot of Lupron, every three months, is the current plan.
I now must get my stress test information from Dr. Bu, my heart specialist. I have my heart stress test on July 13th I will see Dr. Bu on July 21st. As discussed earlier, all of the cancer medicines have possible challenges related to the heart and this is the last check on my heart and the use of the meds.
I will also see Dr. G on July 14th to discuss the blood test from July 10th.
During this visit we will discuss who will give the shots and when I will see Dr. G again. At this point I will get the shot in Dr. Bolds office. She started us on the Lupron and that seems to be the path at this time.
I just changed my appointment with Dr. Bold from July 16th to July 22nd This allows my heart Dr to discuss my heart stress test on July 21st I hope the heart Dr., Dr Bu will approve the Lupron for a 2nd shot. With Dr. Bold I will also discuss my blood test from July 10th. If this blood test shows success, I will have my 2nd shot of Lupron on July 22nd.
I have had a lot of medical appointments. Because they say I have some type of cancer, it seems possible that I should feel down and depressed. That said, “I am feeling great. I keep seeing and hearing things that keep my spirits high.”
I just saw a short news story about the “for get me not” dads that have lost a child. Life is hard for each of them and this group helps each other remain positive. Arian showed me videos of a blind man playing a piano and a man without hands playing a pan flute. Both men played their instruments with others. These men faced great difficulties yet were happy with what they were able to do. They played great.
It seems like every day I hear positive stories about people facing tough times and how they find ways to keep positive.
So, what have I been doing, the past four weeks, besides the 7 Dr appointments and setting up 5 more appointments? The items I mention are items I have done in the past 4 weeks.
I watched several shows on TV that were comedies. I am lucky and still laugh. One show that makes me laugh is “Reba”. I also watched “Matlock”, Perry Mason, Diagnostic Murder and Murder She Wrote. If I am not watching comedies I like these shows.
I watched 18 movies on TV. I watched 4 game shows on TV. I found time to watch a few hours of politics and world news on CNN and Fox news. I also watched a few hours of weather We like movies and went to 2 movies at the Disney movie theaters and 2 movies at Sarasota movie theaters.
I signed up for 6 teaching positions and had one interview. I signed up for two job opportunities besides teaching and called about two more. We took a week vacation to Orlando. ($35 per night) We spent two days in Orlando for the Florida State FFA convention ($85 per day). We went swimming in the Orlando hotel pools on 7 different days and used the hot tubs.
I watched parts of 5 professional basketball games. I watched parts of 8 NCAA baseball games. I watched the last day of the 126th US Golf championship. I watched parts of 2 soccer games and some of a Rugby championship. I also spent 4 hours on the phone talking with my brother and sister about our family farm and 3 hours mowing our lawn. In addition I spent 3 hours shopping for a new door for our lanai, and 20 hours typing and retyping this paper about my health.
I am an elder at church and in 4 weeks I have gone to two pastor interviews and watched two great services online from the pastors that would like to be the pastor of our church. I also attended 4 local church services and set up and cleaned up 4 breakfasts for our church services.
I believe God is working on everyone’s cancer situation, including mine. I believe I cannot get more help than God. I believe God helps the Drs. and nurses. With God’s help, I will continue to hear stories that help me remain positive. What career and or job I am supposed to have is in God’s hands. I would love to work with agriculture; however, I could teach about and market life insurance. I also went grocery shopping 6 times. Maybe I should work at a grocery store?
Selling life insurance may be God’s plan as I own 3 life policies and purchased some policies for several family members. The life insurance industry has gone online and over the phone. It is an industry that may allow me to work from home, regardless of my health. Marlo, my daughter, used to work online marketing vacations from her bedroom. Her bedroom was her office. Marlo passed and left life insurance for her 3 sons, sister and mom. I have heard of many cures for different types of cancer. I am praying for a cure. I am grateful for the help I have received. I am positive more help is on the way.
Whatever you may face, I hope you believe in God, hope you stay positive and hope you still laugh.
When you finally find a reason, that makes you want to live.
When you finally find a reason, that makes you want to give,
Hold on………
